Cross-cultural assessment of the influence of the COVID-19 pandemic on the perceived mental health and medical experiences of persons with inherited bleeding disorders and their parents/guardians.

BACKGROUND: Objectives were to 1) assess COVID-19-associated medical and psychological challenges facing persons with inherited bleeding disorders (PIBD) and their parents/guardians (PG) in Germany, the US, and the UK; 2) describe similarities and differences among these countries; 3) identify needs and opportunities for intervention by patient advocacy organizations (PAGs). RESEARCH DESIGN & METHODS: A cross-sectional, international survey was conducted in three countries using validated psychometric instruments and investigator-developed items. RESULTS: Five hundred and four surveys were included. Significant differences between countries were found including experiences with medical care, specific thoughts, and concerns about COVID-19, anxiety, and other mental health measures, as well as resources used to cope with stress. Age, education, income, race, IBD diagnosis, PIBD vs. BD group, and gender had moderating effects on resources used. Communication with friends/relatives and use of PAG and HTCs as resources for information/coping decreased in all countries during the pandemic. CONCLUSIONS: There were similarities and differences between respondents across the country in the perceived impact of the pandemic, mental health scores, and strategies used to cope with stress.  Recommendations: strategies to increase PAG access for PIBD and their PG during pandemics and natural disasters, ongoing assessment and adaptation to provide supportive resources to specific patient subgroups.

Persons with inherited bleeding disorders (PIBD) and their parents faced many challenges during the COVID-19 pandemic. An online survey was conducted within three countries: Germany, the United States, and the United Kingdom to explore these challenges and address how patient advocacy organizations can better meet their needs. Areas explored included experiences with medical care, concerns, and thoughts expressed during the pandemic, and coping resources used before and during the pandemic. In addition, mental health issues were explored addressing anxiety, COVID-related fears, depression, and resilience. Differences were found regarding experiences with medical care, specific thoughts, and concerns about COVID-19, anxiety, and other mental health measures, as well as resources used to cope with stress. These results provide an opportunity for advocacy organizations for PIBD to develop appropriate assessment, adaptation, and education resources to help patients during pandemics and/or natural disasters in the future.

Physical therapy within US HTCs: A multicentre survey of utilization, practice patterns and pain management approaches.

INTRODUCTION: Practice patterns and utilization of physical therapists (PTs) affiliated with Hemophilia Treatment Centers (HTCs) in the United States (US) are not well known. AIMS: Describe utilization, role responsibilities and practice patterns of US HTC PTs. Identify practice patterns specifically focusing on assessment and treatment of pain. Recognize gaps in utilization and role responsibilities of PTs as part of the multidisciplinary team and suggest guidelines for PT involvement within the HTC. METHODS: Respondents were a subset of a convenience sample of healthcare providers who responded to a non-validated survey developed by a multi-disciplinary panel of haemophilia experts. RESULTS: A 33.0% response-rate (n = 59) representing all regions of US HTCs was achieved. Those working ≥10 hours per week were more likely to provide nutrition education (P = .026) and surgical options education (P < .001). Those who billed insurance for their services during comprehensive visits were more likely to provide education regarding surgical options (P = .046). The majority of PTs (95.0%) evaluated pain regardless of time spent in clinic and felt comfortable treating pain. Fifty-eight percent used a formal pain measurement tool and more likely to use a formal pain measurement tool if billing insurance (P = .004). Top five non-pharmacologic treatments recommended for pain management included splints/braces (84.8%), aquatic therapy (74.6%), orthotics (71.2%), surgical options (47.5%) and yoga (32.2%). CONCLUSIONS: This study demonstrated PT utilization across HTC centres varies widely. Gaps in care may be addressed through salary support, funded education, greater regional/national collaboration of PTs specializing in bleeding disorders and advocacy for insurance coverage for appropriate services.

Understanding the Pain Management Landscape Within the US Bleeding Disorder Community: A Multi-Center Survey.

OBJECTIVES: Pain is a known complication in persons with hemophilia (PWH) as a result of muscle and joint bleeding. Little is known regarding national Hemophilia Treatment Center (HTC) practice patterns related to pain management. The aim of this study was to: 1) Describe pain management practice patterns of HTC providers, 2) Identify gaps and areas of alignment with the CDC pain guidelines, and 3) Address educational opportunities for pain management. This survey is the first extensive description of multidisciplinary practice patterns of pain management for PWH. METHODS: This descriptive study involved physicians, nurse practitioners, nurses, physical therapists, and social workers from federally funded Hemophilia Treatment Centers (HTC) eligible to complete an online survey exploring pain management practice patterns within the CDC pain guidelines. RESULTS: Results of this survey shed light on areas of strength and cohesiveness between HTC providers, including the following: dedication to effective pain management, utilization of non-pharmacological pain options, trial of non-opioid medications first before opioids, maintaining follow-up with patients after opioid prescription initiation, recognizing and utilizing clinically important findings before prescribing opioids, and counseling their patients regarding potential risk factors. CONCLUSIONS: There remain opportunities to incorporate into clinical practice consistent use of tools such as formal screening questionnaires, opioid use agreements, written measurable goals, ongoing prescription monitoring, and written plans for discontinuation of opioid therapy. These results provide opportunities for improvement in education of HTC team members thus optimizing pain management in persons with bleeding disorders.

Unexpected hemorrhage: an unusual and potentially catastrophic clinical challenge.

PURPOSE: Unexpected bleeding or hemorrhage related to the development of acquired factor VIII inhibitors is an emerging clinical challenge in patients. Symptoms can occur suddenly with bleeding and/or bruising that is excessive relative to the degree of injury or severity of a comorbid condition. Diagnosis is difficult, and bleeding can quickly become life threatening if not treated promptly. This review provides current information, using a patient case scenario, to improve awareness and recognition of patients presenting unexpectedly with excessive bleeding of unknown etiology. DATA SOURCES: To complete this review, a search of English-language publications was conducted using Medline and CINAHL databases (1966-2010). CONCLUSIONS: Although development of acquired factor VIII inhibitors is rare, its incidence is increasing in many different patient care settings. Improved awareness and recognition is needed to mitigate the significant patient morbidity and mortality that can occur without rapid and timely treatment by experienced hematology specialists. IMPLICATIONS FOR PRACTICE: Nurse practitioners, as front-line clinicians treating patients in various therapeutic areas, may be the first healthcare professionals who see patients with this disorder. Increased knowledge and awareness of this rare but potentially catastrophic cause of excessive bleeding can improve prompt treatment and optimize patient outcomes.

Nurse practitioners' and physicians' care activities and clinical outcomes with an inpatient geriatric population.

OBJECTIVE: Less is known about nurse practitioners' (NPs') effectiveness in acute care than about their effectiveness in outpatient settings. This study investigated care activities and clinical outcomes for hospitalized geriatric patients treated by NPs compared with those treated by intern and resident physicians. DATA SOURCES: A descriptive comparative research design involved random selection of 100 inpatient geriatric patients and a convenience sample of 17 professional providers who staffed three hospital units. A 1-month study period produced retrospective and prospective data for analysis. CONCLUSIONS: Self-reports concerning 10 primary activity categories indicated that NPs spent a higher percentage of time doing progress notes and care planning than did physicians (28% versus 15%, p = .011) and that physicians spent more time on literature reviews (5% versus 1%, p = .008). When prioritizing care activities, NPs ranked advance directive discussion higher than did physicians (2nd versus 7th, p = .036), a difference confirmed by medical record documentation. Physicians were more attentive to functional status (1st versus 3rd, p = .023), but medical record documentation showed NPs to be more attentive to physical and occupational therapy referrals (p = .001). Analysis of 13 independent organ areas revealed that NPs cared for more musculoskeletal (p = .036) and psychiatric (p = .005) problems. Physicians cared for more cardiac patients (p = .001). NPs' patients were older (p = .022) and sicker at admission (p < .001) and discharge (p < .001). Charges per length of stay were lower (p < .001) for the physician provider group, and patients in that group had shorter stays (p < .001). Readmission and mortality rates were similar. IMPLICATIONS FOR PRACTICE: NPs provide effective care to hospitalized geriatric patients, particularly to those who are older and sicker.